Photo above (left to right): Hans Zellweger, a child neurologist from Iowa who worked in the field and was the thesis supervisor for the PWS research of Louise Greenswag, Gene and Fausta Deterling, from Minnesota, early organizers of what became PWSA (USA), Andrea Prader and Sam Beltran, an early President of PWSA (USA). Front (in blue dress): Vanja Holm. Photo taken in July 1984. Dr. Suzanne Cassidy, past President of IPWSO, outlines the impact of…
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New films illuminate the challenges and achievements of the PWS community
…30 years. Raising a Child with Prader-Willi syndrome: Parents from Hungary, Morocco and Columbia talk about their experiences raising a child with Prader-Willi syndrome. Prader-Willi syndrome Around the World: Parents from Qatar, Malaysia and Norway reflect on how Prader-Willi services differ in their country. Learning from People with Prader-Willi syndrome: People with PWS living in Austria, India and Ireland share stories about their lives. Emerging Clinical Research and Practice in Prader-Willi syndrome: Dan Driscoll, Chair…
Research and Clinical Trials Update Meetings
…among professional service providers throughout the world. What is PWS? Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both sexes equally. Free Diagnosis If you suspect your patient has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to…
40 years awareness of “Rare disease” – Anna and Giuseppe Baschirotto
40 years awareness of “Rare disease” – Anna and Giuseppe Baschirotto My visit to B.I.R.D. in September 2017 by Verena Gutmann (IPWSO Board Member – Austria) Some weeks ago I visited the B.I.R.D. Institute (Baschirotto Institute of rare disease) in Longare di Costozza, a sleepy little village near Vicenza. The agreement between B.I.R.D. and IPWSO needed to be confirmed again and signed. The B.I.R.D. Institute makes it possible to perform the IPWSO diagnostic molecular tests…
Mental Health
…future The final section outlines a long-term strategy for improving global equity, advancing research, and developing more inclusive care systems. It calls for coordinated international action, cross-disciplinary integration of science, and investment in both clinical and social interventions. IPWSO’s proposed research and development strategy focuses on equity, well-being, and treatment innovation. This Report serves both as a comprehensive reference and a practical guide for clinicians, researchers, families, policymakers, and support organisations. By capturing diverse perspectives…
30 Years of IPWSO: Looking back, looking forward
IPWSO Chief Executive Officer, Marguerite Hughes, reflects on IPWSO’s 30th Year and our future plans. The new year is both cause for reflection and a time for finalising plans for the future. We do both in the shadow of COVID and in a spirit of solidarity towards those who have suffered because of it. The highlight of 2021 for IPWSO was its 30th Anniversary Workshop, generously sponsored by Novo Nordisk, and hosted online in August….
Flourishing at 40
…morning. As you may be aware, one common characteristic of PWS is the extremely high threshold for pain. The fact that she was complaining was alarming. After spending nearly 24 hours in the emergency room, we were told she had an incarcerated hernia and required emergency surgery. Our entire world changed at that very moment. While in surgery Andrea went into respiratory failure. Following surgery, she was now in a coma and on a ventilator….
IPWSO Health ECHO® Videos
…Nutrition; Physiotherapy; Early intervention; Endocrine aspects; Orthopedic problems; Additional health issues. The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary. Dr Kate Baker, Cambridge University Hospitals, University of Cambridge “Prader-Willi syndrome: Genetic diagnosis” PART 2 of Dr Kate Baker’s presentation, “Prader-Willi syndrome: Clinical presentations and genetic diagnosis” presented at the IPWSO Health ECHO on February 16, 2021. This part of the talk…
11th International Prader-Willi Syndrome Organisation Conference Terms and Conditions
…to conduct, IPWSO reserves the right to exclude anyone from the Conference, who in its sole opinion conducts themselves in a manner which may be offensive to others. IPWSO will seek redress for any financial damage caused by any individual in such circumstances. In relation to Health and Safety please refer to the University of Limerick’s Health and Safety Essentials Booklet and Statement, copies of which can be found at http://www.ul.ie/hr/health-safety-ul, and https://www.ul.ie/hr/ul-safety-statement. The University…
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Information for
Families
Find useful guides, research and information to help families manage PWS.

Information for Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.

What is PWS?
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome.